Well, the good news is that Karen did wake up again on Sunday (yesterday) and the day was sprinkled with fleeting windows of lucidity and engagement. These brief interactions with Karen met our new, woefully low criteria for what passes as a "good day" so we were pretty grateful for them and took advantage at every opportunity.
Well, maybe not all of us were grateful, at least not immediately. Dash made the mistake of wandering into our room to give his mom a hug and kiss only to get ambushed when Karen clutched his arm and began talking to him. I stopped folding laundry and excused myself from the room. About ten minutes later he emerged, clearly rattled and a little hoarse of voice. Throughout Karen's illness Dash has insulated himself from it as best he can, only occasionally allowing us to fill him in on the most basic details. He's been a skipping stone for the last three years. touching down as briefly as possible before jetting away until circumstance and the laws of nature force him to skim across the surface again. Yesterday that stone finally plunged into the water.
As for Miranda, she spent time with Karen going through old photo albums as they used to do. And at one point in the day, Miranda was able to rouse the rowdier side of Karen. Since her mother has been struggling mightily to remember things of late, Miranda's innocent query about whether she remembered something stirred something in Karen (who remembered, by the way). Thinking someone had been slandering her memory, my lovely wife announced, "Tell that bitch ass to shut her stupid mouth." So, clearly, not everything has changed for the worse.
And some things, such as, oh, let's say, ME, are just as terrible as always. There seems to be a bit of cosmic tomfoolery at play right now, with both my beloved Mets and her beloved but clearly doomed Cubs battling it out in the playoffs. Decorum would suggest that I should be rooting for the Chicago team but not only am I not, I am needling her about how the Mets will boot the Cubs back to Chi-town and baseball irrelevance in just a few more days. She knew what she was getting into all those years ago and I think she'd be disappointed and/or locked into some kind of Invasion of the Body Snatchers type panic if I acted any differently now. I will say in my defense that I have agreed to cheer on the Cubs if they make it to the Series. (But, man alive, I hope they don't because I could really use a Mets championship right about now).
Margaret, Karen's closest friend since high school, arrived late Saturday afternoon from her home in not-too-distant Chico. Margaret and Karen had discussed having her present at the end so I called her up Saturday and told her there was no time like the present. Having her here has been a tremendous help. As a respiratory therapist, Margaret has all kinds of nurse training and her input has been invaluable in terms of keeping Karen comfortable and shoring up the finer points of care that I would never have even considered. Between the two of us--abetted by Miranda's frequent assistance--we seem to have Karen pretty well taken care of.
That said, we are clearly facing an end date. Karen has not had any food or water for days and her kidneys clearly seem to be shutting down. Her body temperature cycles between hot and cool (she dipped down to 95.7 degrees yesterday afternoon). Our hospice team has told us there are days left, roughly a week or so from that last drink of water which puts us somewhere mid-week for the big wrap-up to our sorry little journey. Tragically, those windows of lucidity now seem to be largely shut. While there will probably be a handful of moments where Karen is communicative today, they will be brief and far between--she is clearly flagging now.
And those windows are unlikely to open again. At all. Karen's pain keeps escalating and she needs larger and larger doses of meds to control it. Starting tomorrow, we will be initiating palliative sedation. This is a deeper level of sedation that will alleviate her pain but will knock her out cold. She'll stay that way, probably slipping into a coma that we probably won't even recognize as such, until she dies.
About that palliative sedation...Karen was unable to talk to the doctor or nurse about it during their visits this morning. I had talked to her about it during the windows I had over the last couple of days. With Karen so frequently confused, I've adopted a policy of polling her multiple times on bigger issues like this, essentially compiling a number of "votes" to guide our choices to make sure she's understanding and I'm getting the message right. This is something she very strongly wanted--the episodes of pain that grip her and leave her writhing on her bed (the most movement she'll make in a day) have left her fearful of more.
But she couldn't make that request today. She wasn't engaged. So I told them to follow through. This is the first time I've had to make a medical call all on my own and I cannot tell you how relieved I was that I had the knowledge of what she wanted. Going forward, I'll need to rely on all those nightly conversations where we hashed out our cancer plans over and over again. I'll rely on that and my own sense of what she would want. I've known her 37 years, we've been married for 25. So I think I'll more than likely not totally screw it up. Still it's an incredibly intimidating responsibility.
Here's hoping I get it right.
Here's hoping we can see her home as peacefully as possible.
No comments:
Post a Comment